Youth-GEMs 7th Science Café

A brief update about the 7th Science Café (June 19):

In this café Mariël Kanne (ethicist) was invited. Mariël asked the young advisors to have an ethical reflection on how to work with young people with lived experiences. In our project, young people are sometimes asked to share their experiences and we should do so in an ethically responsible manner. Research and theories show that values impact how we act and react. Therefore, we discussed some fundamental values and asked ourselves whether we share these values and elaborate on them.

One of the young people mentioned that there should also be ethical questioning in mental health care. She experienced that most people decide about you, not with you. Autonomy is considered to be an important value: give children a choice in their own support/help/treatment. Responsiveness to the young people’s needs is another value. Medical records should be transparent but caregivers often don’t seem to know. 

Transparency was added as another value, as was honesty, trust, reliability, clarity, safety and, not really a value but very important, a sense of belonging. We discussed whether certain topics should have be avoided because they are too delicate and concluded that avoiding topics also eliminates the freedom to talk about mental health. We should however be inclusive in our language: stereotyping can be discriminating. Artificial Intelligence and responsible conduct of science are mentioned as other topics that require ethical reflection.

Next, PhD researcher Winni Schalkwijk taught us about the interaction between genes and the environment. We learned that some traits and diseases are caused by mutations in single genes but most traits, including mental health traits, are polygenetic. Polygenic risk scores can be used to study the relationship between genes and other factors. It stands out that one environmental factor is associated with many different mental disorders and one mental disorder with several environmental factors: trauma can be related to many outcomes. This supports the transdiagnostic approach in Youth-GEMs research. We found out that there are many genetic correlations between mental disorders, while in mental health care they are treated separately. When asked which environmental factors are most relevant to study, having a safe place, poverty and attachment were mentioned. Data from various international longitudinal studies are harmonized and analyzed for further understanding.

Find out more about Youth-GEMs here.